by Ben Mattlin
On a later visit he administers a rudimentary IQ test. After, he tells me I’m well above average. I don’t believe him. I think he’s just being nice. If anybody looked like he needed someone to be nice to him, it was I. He says no, he’s not just being nice. He insists his test doesn’t lie. And I begin to think maybe everyone else isn’t as smart as I assume they are.
***
Because of being so stationary, I take physical therapy three times a week. Which reminds me of the pointless exercises of my early childhood, except this time I’m at an age to enjoy the attentions of my therapist, a really attractive brunette. As she flexes my knees and elbows, and orders me to work my fingers by buttoning and unbuttoning a raggedy old shirt, I only grumble slightly and, I hope, with the utmost charm.
The solitary television set in my room, mounted high, is on pretty much all the time. It’s the summer of the Son of Sam killer. Elvis Presley dies. A new actress will replace Farrah on Charlie’s Angels, and I enjoy reading in People magazine about her measurements (Cheryl Ladd’s bust is even bigger than Farrah’s!). But the weight of all this, the impact, is the dour realization that the world outside these institutional walls goes on, while I go nowhere.
One of my cellmates, er, roommates, with whom I have a begrudging affinity because he likes the Beatles and covets my tape collection, wonders aloud about the meaning of Elvis’ demise. “Does it mean Elton John is now the king of pop? They always called him the prince, so—”
Try as I might, I can’t block out all of it. One sound in particular will haunt me for years to come. It involves poor Murph, another of my roommates, a young man who is rumored to have lived at Happyvale most of his seventeen years!. It’s said he could go home but his family doesn’t want him . . . it’s said they visit only on Christmas, Easter, and maybe his birthday. I don’t know if any of this is true, but he never leaves his bed for a wheelchair (then again, neither do I), and his infrequent speech is hopelessly garbled, probably from cerebral palsy or a brain injury. You don’t need to understand his words to hear the urgency, anger, frustration, sorrow.
Yet worst of all is how the nurses tease him, loudly, every few days when they discover wet semen on his sheets, his catheter blocked or popped off. “Hee-ha!” the loudest one laughs. “What you been doin’?! You gotta cut that out! I ain’t cleanin’ up this mess no mo’! You a bad boy!”
(That’s how I remember hearing it anyway, a dialect I normally find comfortingly authentic and down-home suddenly turned sharp and menacing.)
I vow never again to be jealous of the cool, popular boys at school or resent others’ mobility and freedom. I’ve come to realize that I could have a lot less mobility and freedom than I do. I will remember how lucky I am. I’ll put the inimical, tough-guy Ben to rest forever when I return to the land of the living, and always try to appreciate my life just as it is. As long as it’s far away from here or any place like it.
I make this vow privately and never tell anyone. But it’s dead serious. The most religious experience I think I’ll ever have. A promise I make to God. “Let me out of here, and I’ll never forget.”
On Labor Day weekend, Barbara and Dad visit with their new baby, Jeff. Barbara barbecues a chicken in Happyvale’s outdoor area. My bed is rolled outside, too. We all try to pretend it’s pleasant and normal.
***
Life, however compromised, settles into a pattern. Back in New York, the school year is starting without me. One afternoon in early-September, Mom brings a manila envelope stuffed with my classmates’ good wishes. I know it was an assignment from Mr. Penis, but I’m moved nevertheless and reread every note. I call it my fan mail, and still have the package today.
In response, lying there like a slab, I ask Mom to take dictation. I want to write a sort of thank-you to my class, or really an explanation of what I’ve been going through—to head off rumors, excess sympathy, and most of all awkward silences upon my return. I want to submit it to the school newspaper. Still figuring humor is the key to improving my social standing, I give it the sarcastic title What I Did Over My Summer Vacation, and begin it with, “Have you ever wondered how dirt gets on the ceiling?”—a reference to the boredom of lying supine day after day. I end with, “Try not to be too jealous.”
Toward the end of my stay, I gather sufficient courage to ask one of the volunteer teaching aids if she’d like to go to a movie “when I’m back on the outside.” She’s a pretty, dark-haired high-school girl with a warm smile, and says yeah, sure, but I’m not confident she means it and I wonder how I’d follow through anyway since she lives in Westchester. Still, it’s good practice, I figure, since I didn’t do so well with my Star Wars date.
***
When at last I’m returned to Special Surgery, I’m put in a regular room in pediatrics with one other boy and no individual Trinitron, just one big set for the room. One evening he asks me what it’s like to be a teenager. He must be about twelve. I don’t know what to answer. Me, a teenager? It’s then I realize my lengthy incarceration has made me older in some indefinable way, or at least feel older.
The halo and trach are removed and the cast cut back, though I must continue wearing what’s left, which is most of it, for several more months. Still, the end of my hospitalization is near! After four months that were supposed to have been six.
I’m truly lucky.
You see, the odd assortment of suffering I witnessed, especially at Happyvale, will leave an indelible mark. I’ll never forget Murph, my masturbating Happyvale roommate. After sharing a slice of life with kids like that, I cannot be the same again. I know exactly how the other half lives, and it’s not good. For those of us with severe disabilities, you can never be too safe, too well protected, because the institutional snuffing out of privacy and dignity can never feel so very far away.
I’ve lost a lot of weight, too, despite the Doritos—which feels good, since I was fat—and I’m taller than I was, since my back is straighter. I also now sport several long, downy tufts on my chin and will need to shave as soon as I’m released. A new man, within spitting distance of fifteen.
***
When I return to high school, it’s late-October. The weather has turned chilly and gray. The kids are already settled into a new routine, but there’s little change from last year. It’s the same teacher, Ekkehard Piening; the same kids—there is only one class per grade—and, at Steiner, the routine scarcely varies from year to year or, I suspect, generation to generation.
To my surprise, I’m greeted by an abundance of bonhomie. The essay I dictated to Mom about my hospital experience has appeared in the school paper, and my words worked their magic!
I have to wear the upper-body cast, which protrudes from my shirt, but I have no shame about it and the kids are accepting. At recess I have someone tip my wheelchair back against the wall to ease the pressure on my spine—doctor’s orders—and even that goes smoothly. Plus my terrific attendant, Kenny, decides to stay on, despite the four-month hiatus. He doesn’t stay with me at school but takes me there and back every day and works late when Mom goes out at night. A medical student on leave, he’s smart and we talk about everything. He becomes the nice big brother I never had. I begin to see how important the quality of my attendant is to my very quality of life.
Every second weekend I visit Stamford, where Dad’s my attendant. Jeff is growing up, which is fun to see, but I have no friends and nothing to do there and it’s boring. My friends have become very important to me.
With each year of high school my roster of friends increases. More and more, I let them push my wheelchair in Central Park or on the street, which gives me a feeling of autonomy from the parental security blanket. I get a little nervous when they’re pushing my chair over the potholes and bumps, but I never let on.
At school, one of my friends, Nanci, remembers my penchant for cartooning and wants a drawing of a shirtless Robert Plant, based on a magazine picture she cherishes. Flattered, I take special care on the important
details, which doesn’t go unnoticed. She squeals in delight when I present her with my penciled masterpiece. “Look—he even got the bulge in his jeans!”
Alec, still the big brain, aces his SAT and will probably go to Harvard, like Dad. I don’t want to go that route or be like that. I’ve learned to stop being a dork, trying to impress others with my intellectual chops, which I’m not sure I have anyway. The new Ben goes with the flow, lets the good times roll, and never forgets that misery and suffering are as close as my shadow.
When time comes for me to take the SAT, Mother—as I’ve taken to calling her, to show my maturity—gets me tutored. She knows I haven’t had Alec’s academic training. Mom has become happier, except for the weekends of chemo- and radiation-induced nausea, during which she hides in her bedroom. She’s become an item with a man named Bob, another writer and Harvard grad, like Dad. She’s also working full-time at a small publishing house. Though she complains that it doesn’t pay much, she insists she enjoys the camaraderie and intellectual stimulation. She’s even trying to write her own book about having cancer. She says when it’s published she’ll take us to Europe.
For her, seeing me grow up and managing a degree of independence is a relief and a joy, she says. As if she doesn’t want to leave this world worrying about me.
I tell her the first time I smoke cigarettes with friends in the Park. I know she won’t get mad, and in fact I’m almost showing off, like smoking with the guys is a badge of the acceptance I’ve achieved. Sure enough, she likes it; she’s glad I have enough autonomy to be a little naughty. Fitting in and being well socialized have always been important to her.
It’s very nice that Mother and I now have this kind of understanding and honesty between us. I’m glad I didn’t “divorce” her and move to Stamford. Dr. Friend, the shrink, knew what he was talking about!
When I at last take the SAT, Mother makes sure a proctor goes over my answer bubbles. I’m able to handle a regular pencil (or lightweight pen) and paper pretty well, but she’s worries I don’t press hard enough to make my answers register.
Soon all such standardized tests will be required to make accommodations like that for students like me. But at the time, we have to take accommodations into our own hands.
CHAPTER FIVE
THE END OF CHILDHOOD
1979-1980
“I’m not what you’d call a brilliant thinker—such results as I get are usually the fruits of patience, industry, and unimaginative plugging, helped out now and then, maybe, by a little luck—but I do have my flashes of intelligence.”
—Dashiell Hammett, “Zigzags of Treachery,” Detective Stories
“If you apply here,” the heavyset man in a boxy charcoal-gray suit is telling me between slow, heaving breaths, “you’ll get in.”
Dappled sun seeps through the cream-colored curtains behind him. It’s early morning. Still. Barely a heartbeat has passed since I was wheeled into this musty office — Dean What’s-His-Name’s words catch me off-guard. I look to his semi-serious, muffin expression for a clue as to how to react. Was it a prediction, a joke, or a promise? My eyes dart away, down at my still fingers folded haphazardly in my blue-jeaned lap. Semi-casual in my attire: sport coat, good shirt, good jeans. Exuding self-confidence. Iconoclastic. I imagine my listless hands gesturing dramatically. Pointing. Clapping.
Did he actually say . . . ? Warm excitement rises within me.
“Oh?”
“Yes. You hear me? How’s that make you feel? About what I said. Surprised?”
Again, I’m speechless. The thing is, I haven’t had a chance to utter Word One of my carefully crafted, privately rehearsed spiel! I haven’t told him how great I am, or why I want to go to Amherst (not that I’m absolutely certain I do) . . . what I’d bring to the place! I haven’t unleashed any of my knock-his-socks-off questions!
I’m a little cloudy-headed. Last night, after five hours’ drive in a blinding downpour, with Kenny at the wheel of the old, unreliable, Checker behemoth, we’d spent the night at a motel. Just Kenny and I. It’s the first time I’ve traveled so far from home without parents, and I’m still proud-excited-scared.
Mother had said I was responsible for finding the motel and getting to my appointment on time. She wasn’t sure Kenny had ever checked into a motel before! As if people from Trinidad, by way of Brooklyn, don’t know the ways of the world. It’s your responsibility. You have to be alert and speak up. Just like with my seat belt all those years ago Once checked in, though it was nearly ten PM, I dutifully phoned home to announce I was still alive, then watched an hour of crappy TV—the sort I knew Mother wouldn’t approve of, not that there was much TV she did like—and slept with the contentment of one who knows he’s done a good job. Kenny was in the next bed, ready to respond if I called out to roll over. But I didn’t.
In the morning, directing Kenny to dress me to casual perfection, I knew I’d never have had a chance at this kind of freedom if Dad had come along, as originally planned. In this wonderful (assisted) self-determination, this semi-autonomy, I saw my adult future, and I liked it.
And now, here in Amherst’s rarefied admissions office, I’m tongue-tied. “I assume”—I venture—”I assume I’d be the only handicapped student here?”
“Yes. Quite frankly, we don’t have a lot of experience with people like you, people with your particular affliction.”
Not crazy about the word “affliction,” but I soldier on. “I’m used to being a kind of pioneer.”
Zing! It’s one of my rehearsed taglines, and I more-or-less led him to it! No pitiful handicapped-afflicted boy, me; I’m a pioneer, boldly going where no man has gone before!
I tentatively release my remaining arsenal, climaxing with the four killer questions guaranteed to get you accepted, according to a friend of Mother’s— notwithstanding that my acceptance might no longer be in doubt.
“I’ve always gone to progressive schools”—my embellishment—“so I wonder, what is Amherst’s educational philosophy?”
The Dean clasps his hands behind his close-cropped head and sighs audibly. “Good question,” he says and then mutters something about education and individuality and maturation and citizenship, blah blah blah.
“Well,” I follow up, “what would you say is the political climate at Amherst? Left, right, or center?”
He pauses, leans forward thoughtfully. “You mean among the administration, faculty, or students?”
My insides freeze. In my small high school, the faculty is the administration. “All of the above.”
I have no idea what his answer is. I’m not listening, except for the next silence, which cues question number three
“Who really runs the college—the students, the faculty, or”—I add abruptly—”the administration? Who has the power?”
The Dean’s answer comes slowly, whatever it is. Doesn’t matter. I’m busy trying to remember the fourth question. Damn! Well, good enough.
Yet another question lingers long after I leave his office and Kenny drives me the long way home to Central Park West: Is Amherst honestly pre-accepting me simply because I’m handicapped?
***
What I don’t know is, at about the same time, a disabled person named Davis is suing a school called Southeastern Community College for failure to provide equal access. The case goes before the US Supreme Court, which sides with the plaintiff and establishes a precedent for requiring “reasonable modifications.”
Simultaneously, more or less, Congress establishes federal funding for independent-living programs, like the one in Berkeley, and creates the National Council of the Handicapped, which is charged with overseeing accessibility in public education.
Also in the late 1970s, the Disability Rights Education and Defense Fund is established, in Berkeley (where else?). It still leads the fight today.
Meanwhile, at Denver’s Atlantis Community—an independent-living center modeled on Berkeley’s—emboldened activists launch demonstrations against t
he local transit authority for failure to install wheelchair lifts on public buses. Guys and gals in wheelchairs actually sit in the middle of the street blocking buses! Their fire spreads to other cities and, by the early ’80s, will spark a national grassroots organization called ADAPT, or American Disabled for Accessible Public Transit. A decade later, most city buses will have wheelchair lifts and wheelchair-lock-down apparatuses. To keep the momentum going, though, ADAPT will morph into a network dedicated to fighting the institutionalization of people with disabilities in favor of in-home long-term care. Now standing for American Disabled for Attendant Programs Today, ADAPT remains active.
And in 1978, my junior year of high school, Harper & Row publishes Professor Frank Bowe’s Handicapping America: Barriers to Disabled People. Bowe, one of the leaders in the protests that led to implementation of Section 504 of the Rehab Act, is blind. His exploration of the policies and attitudes that deny people with disabilities full equality becomes a kind of Souls of Black Folk for the fledgling disability-rights movement. In 2007, when Bowe will die at age sixty, he’ll be a tenured professor of disability studies at Hofstra University—an academic discipline that might not exist without his seminal work.
But at sixteen, I’m stupefyingly unaware and dismissive of these and most other sociopolitical events. I might have a vague sense that there are activists somewhere in the cosmos agitating for better treatment for people “like me,” but what’s that got to do with me personally? Besides, I have bigger things on my mind. Thinking about college has me as self-involved as a bride.
***
“You’re kidding?” is Alec’s reaction, on the phone from Harvard, to my news about Amherst. He would’ve been well suited to shtetl life, I think for the first of what will become dozens of times. Anything new, different, or unexpected is inconceivable and suspect.
